Recent advances in medical technology have dramatically improved the survival rate of children with congenital heart disease. Over 90% successfully respond to treatment, and over 400,000 of them reach adulthood.

Yet parents restrict these children’s activities due to health concerns about infections or physical exertion, and limit their opportunities to exercise or go outside.Consequently, these children rely on parents to look after their own health. Only 20% of teenagers with congenital heart disease understand the illness, and there is an emerging problem of the disease exacerbating once they become adults and start living independently from their parents.

The project aimed to encourage parents with such concerns to go outside their comfort zone by giving them the opportunity to understand these children can do things on their own. It also fostered a better understanding in society about congenital heart disease, while helping these children and their families to become more independent.

-Since 2015, we have been creating system for children with congenital heart disease to exercise safely, in collaboration with Japan’s largest patients’ association, specialists from the JSPCCS, and entertainment-type NPOs for medical welfare. We are also planning and running the project with a 20-year old young adult patient.

-From August to May 2015, we developed an enjoyable sports program for children with congenital heart disease, with assistance from a young adult patient and NPO staff with medical knowledge.

-Over two years (August 2015, November 2016, September 2017), we ran enjoyable sports programs for over 100 children with congenital heart disease, and networking events and workshops for their parents. Over 100 medical and welfare staff also participated.

-In March 2016, we screened a documentary showing congenital heart disease through the eyes of young adult patients, and family-related issues.

Since April 2016, patients’ associations nationwide have been screening this documentary for families.